European support groups get endometriosis into the headlines

April 2005

Endometriosis Support Groups in Europe simultaneous arranged awareness and informational events in Austria, Denmark, Finland, France, Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Spain, Sweden, and the United Kingdom.

The theme for Awareness Week 2005 (7-13 March) was making a difference at grass roots level, for women with endometriosis and those that care for them to play an active role in their communities.  And, never before, have so many support groups collaborated in raising awareness of endometriosis simultaneous – and it paid off!

Hitting the media!

Representatives from Austria were on national TV, Wien Heute, on the day of their first national meeting, and prior to the Dutch meeting, the Endometriose Stiching had publicity in a woman’s magazine called Opzij (=“Move aside”), and a newspaper published a large interview with one of their board members. Endometriose Foreningen in Denmark hit the front page of Kristeligt Dagblad, which led to several radio interviews, and appearances on two national TV stations during prime time viewing!

The National Endometriosis Society in the UK published preliminary results from the Pain and Quality of Life Survey, and together with the SHE Trust launched a petition which will run until 30 September 2005. The NES was featured twice on national TV, and Metro (with a circulation of over 1 million) ran an article on endometriosis. Pegasus, a UK regional support group, secured local press coverage.

In France several regional newspapers, pharmacists’ magazines, TV, and medical websites covered the multiple activities of EndoFrance, and both Svenska Endometriosföreningen, and Endometrioseforeningen in Norway, had excellent articles published in the national press.

Spanish book launch

Asociacion de Endometriosis Española launched their first book in Spanish at a gala dinner, and had wide coverage in the press, appeared on TV twice, and was interviewed for the radio 13 times!

Reaching out to women with endometriosis

Endometriose-Vereinigung Deutschland e.V. provided “Endometriose peer-to-peer consulting telephone” during awareness week (200 calls resulting in 60 consultations), moderated a chat on the topic of “Endometriosis and Partnership”, and held both their AGM and a workshop at the University Hospital in Frankfurt. They appeared on the TV programme “Service Gesundheit” and had articles in several regional and nationwide newspapers.

Reaching out to legislators

Finally, during Endometriosis Awareness Week, Lone Hummelshoj (Denmark) and Robert Music (UK) met with members of the European Parliament, to emphasise the impact of endometriosis not only on women and their families, but also the cost of the disease to society (see full article). This has resulted in the development of a European Written Declaration on Endometriosis.

Please take a moment to contact your local member of the European Parliament and urge him or her to sign the Written Declaration on Endometroisis before 1 June 2005 in order to get the European Parliament’s backing for the pan-European endometriosis campaign.

As a follow-up, Lone and Rob met with the European Commission on 21 April and took the campaign even further.

We have surely proven that by working together across borders we truly make a difference!

Endometriosis Awareness week in 2006 is 6 – 12 March.

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